Assessment for Identification

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Assessment for Identification

Overview

The diagnosis of autism spectrum disorder (ASD) presents a maze of questions that can be perplexing for both parents and educators. When is the right time to seek an assessment? Who should conduct the assessment? What should be included in the assessment? This module will provide guidelines to help parents and educators to navigate this maze.

Module Objectives

The learner will:

• Identify the main reason why early identification is important
• Identify two challenges to early identification
• Name the most important factor to consider in selecting a professional to conduct an autism assessment
• Describe the difference between diagnosis and eligibility
• Describe the difference between interdisciplinary assessment and multidisciplinary assessment
• When is the right time to refer for an assessment?
• The importance of early identification and treatment of autism spectrum disorders (ASD) has been well established. Parents and educators should seek assessment as soon as signs become evident. Early symptoms of ASD may be apparent by the age of 12 to 18 months or sooner (see Table 1). While diagnosis is often possible by the age of 2 (Lord & Spence, 2006), most children are not identified until years later. Indeed, there is typically a delay of two to three years after symptoms first become apparent (Filipek et al., 2000). Because early intervention makes a critical difference in the progress of individuals with ASD, delay in identification is a matter of great concern (Siklos & Kerns, 2007).
• The American Academy of Pediatrics released a clinical report with guidelines for identification of children with ASD (Johnson, Myers, & Council on Children with Disabilities, 2007). The guidelines stress the importance of early intervention and contain recommendations to conduct observation for ASDs at every well-child visit and to formally screen at 18 and 24 months or at any point a parent raises concern. When multiple risk factors are present, it is recommended that the physician avoid adopting a "wait-and-see" approach. The report discusses the importance of a team evaluation conducted by specialists in ASDs.

What factors contribute to early or delayed identification?

Many factors, including symptom severity, race, gender, and attitudes towards diagnosis, contribute to delays in identification. Children with more severe communication deficits tend to be diagnosed at younger ages than are those with primarily pragmatic language (social language) challenges. As a result, the average age of diagnosis of autism is four to five years earlier than the average age of identification for Asperger Syndrome. Special awareness of the relationships between race and gender with early identification is also needed. Research has found that African-American children are identified later and receive alternative diagnoses prior to being identified with an ASD (Mandell, Ittenbach, Levy, & Pinto-Martin, 2006). Further, it is well established that girls are diagnosed at a later age than are boys. Finally, evaluators sometimes hesitate to assign a diagnosis because of fear of the impact of the label or of misdiagnosis. Parents may hesitate to accept the diagnosis for the same reasons. Given the benefits of early intervention, the risk associated with delayed identification is greater, however.

"Early identification of children with autism and intensive, early intervention during the toddler and preschool years improves outcome for most young children with autism" (Filipek et al., 2000, p. 468).

Who should conduct the assessment?

An extensive body of literature is available on the best instruments and techniques for identifying ASD; however, even the best instruments are meaningless when those interpreting them do not have the training and experience to make accurate judgments. Assessment of ASD may be completed by a number of professionals, including psychologists, neurologists, pediatricians, or psychiatrists. Parents and educators should be careful not to make assumptions about the knowledge base of professionals. In each of these fields, there are those who are knowledgeable about ASD assessment and those for whom this is not a strength. It is most important to find specialists who are knowledgeable about and experienced in assessing ASD. The field of the professional is less important than expertise.

Case Study: Brad

Brad was referred for an evaluation for special education when he was in the first grade. At that time, Brad did not have a medical diagnosis of any autism specrtum disorder (ASD). His parents indicated that they believed that there was always something "different" about him-he was delayed in learning to walk and talk and did not play with his peers. According to his parents, since Brad was 2 years old, his pediatrician had always held that he would "grow out of it" and encouraged them not to worry.

Brad's teacher noted that he was having great difficulty completing work and socializing with his classmates. Knowing the importance of early intervention, she encouraged Brad's parents to consent to the referral process. The interdisciplinary team found Brad to be eligible for special education under the category of autism. The assessment team made recommendations for services. In the following months, Brad began to make significant improvement.

How do I avoid common pitfalls?

Seeking assessment from an experienced and knowledgeable professional prevents delay in accurate identification and frustration of unanswered questions. Many parents describe experiences of being told that their child is "going through a phase" and that they need to be patient while their child "grows out of it." Other parents report that they have been advised that a single behavior, such as showing affection or using sentences, indicates that their child cannot have an ASD. These same parents may later learn that their child has the diagnosis. Early encounters with professionals who provided false reassurance may sabotage parents' receptiveness to the input of others who recognize the symptoms of ASD exhibited by their child. Alternatively, the error of incorrectly assigning the diagnosis of an ASD carries risks. Working with professionals with expertise in ASD helps to avoid these and other pitfalls.

What is the difference between diagnosis and eligibility?

Parents and educators should know that the terminology surrounding assessment can be confusing. In particular, the terms medical diagnosis, diagnosis, and eligibility are often misunderstood. While the term medical diagnosis is often used, it is a misnomer. "There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels" (Autism Society of America, n.d.). Wide use of the term has resulted in the false belief that the diagnosis must be made by a medical professional. In fact, in the absence of specific medical concerns, many specialized teams do not require staff with medical training.

"There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels" (Autism Society of America, n.d.).

The contrast between diagnosis and eligibility is subtle (see Table 2). The term diagnosis is most often used in assessments conducted in the private sector. These include assessments completed at medical facilities, by private neurologists or psychologists, or other private providers. Diagnosis in the United States is most often based on the current edition of the Diagnostic and Statistical Manual (DSM-IV-TR). In this system, the umbrella category of Pervasive Developmental Disorders encompasses Autistic Disorder; Pervasive Developmental Disorders - Not Otherwise Specified, Asperger's Disorder, and others.

Assessment in the public school system is conducted for the purposes of establishing eligibility for special education services and gathering information to assist in planning an individualized program for the child. The Individuals with Disabilities Education Act (IDEIA), federal legislation, has defined the eligibility category of "autism" as a disability that affects communication and social interaction. When there is a need for an assessment to determine eligibility for ASD (or any eligibility category), it is the responsibility of the public schools to provide it at no expense to the family. According to IDEIA, ASD may have associated features such as repetitive activities, stereotyped movements, resistance to change, and unusual sensory responses. Students with characteristics of DSM-IV-TR diagnoses, including Autistic Disorder, Asperger's Disorder, Pervasive Developmental Disorders, Not Otherwise Specified or other ASD, may qualify under the eligibility category of "autism." They may also qualify for special education services under another eligibility category, based upon their unique characteristics. A disability must have an adverse effect on a student's education in order for him to be considered eligible for special education services, and must require specially designed instruction. Therefore, a previous diagnosis of ASD in the private sector, does not necessarily result in eligibility for special education services in the school setting. Unfortunately, school teams sometimes fail to consider educational factors beyond academics. As a result, academically capable students with ASD who display deficits in socialization that impact educational progress often are not served. Each eligibility decision is based on a multi-factored evaluation of the individual student.

What should be included in an assessment?

Autism spectrum disorders are classified as pervasive developmental disorders. This means that multiple areas of functioning are impacted. Due to the complex nature of ASD, a comprehensive assessment that addresses a range of areas must be conducted by professionals with expertise across several fields. This is best accomplished using an interdisciplinary approach.

A comprehensive autism spectrum evaluation should include the child's developmental history, observations, direct interaction, parent interview, and evaluation of functioning in the following areas: social, communication, sensory, emotional, cognitive, and adaptive behavior. At times, additional assessments are indicated. For example, significant motor difficulties or suspicion of seizures require further evaluation. By gathering information across multiple areas, a complete diagnostic picture can be obtained. A thorough assessment helps parents and educators to make more comprehensive treatment decisions. The results of the ASD evaluation should be summarized in a written report and include specific and meaningful recommendations. The evaluation should be followed by a face-to-face feedback session with the opportunity for parents to ask questions

What is the difference between interdisciplinary and multidisciplinary assessment?

An interdisciplinary approach to assessment results in the strongest diagnostic and programming decisions. The word interdisciplinary is not interchangeable with the word multidisciplinary. While both approaches involve professionals from various fields, only in interdisciplinary assessment do professionals work in a truly collaborative manner to integrate information for diagnostic and programming decisions. In contrast, in a multidisciplinary approach, results are compiled, rather than integrated, and decisions are made with little collaboration across areas of specialty.

Participants on interdisciplinary assessment teams should have expertise in their own field as well as in ASD. Assessment teams typically include a speech pathologist and a psychologist. Based on the needs of the individual, additional team members may include a specialist in cognitive assessment, an occupational therapist, a physical therapist, or a medical professional. Federal law mandates that autism spectrum assessments in the schools be conducted by individuals from multiple disciplines. In contrast, there is no such requirement in the private sector. In both the public schools and the private sector, assessments can range in quality (from a diagnosis jotted down on a prescription pad to a thorough interdisciplinary team assessment report). Parents and educators should ask questions about the approach being used. Another area to consider is the scope of the ASD assessment. As stated previously, there is no one factor that should determine whether an individual does or does not have an ASD. Assessments should address all areas of development to truly look at the unique characteristics of ASD.

Case Study: Lisa

Lisa a fourth grader, was referred for an evaluation in the public school. When the interdisciplinary team met with Lisa's parents, they revealed that Lisa had previously received an extensive multidisciplinary private evaluation that had resulted in the diagnosis of attention-deficit/hyperactivity disorder (ADHD). Review of the previous report by the school team revealed adequate information to suggest that Lisa might meet the eligibility requirements for identification as a student with an autism spectrum disorder (ASD). In response, the school team completed an interdisciplinary assessment that ultimately indicated that Lisa's profile contained strengths and challenges that most resembled that of ASD. The school team subsequently recommended eligibility for special education under the category of autism. The school team considered the possibility that, because the private multidisciplinary team did not integrate the results from the varied professionals involved, their conclusion failed to capture Lisa's total picture. This example highlights the strength of interdisciplinary assessment.

Summary

There are important benefits of early identification and treatment based on accurate and comprehensive assessment. In contrast, incomplete assessment results in a limited understanding of strengths and needs and, in turn, can lead to decrease quality of care due to unidentified needs. Because of the importance of early identification, parents and educators should learn the signs of ASDs and refer for screening and assessment if symptoms are observed. Parents and educators may further advocate for children by seeking a comprehensive, interdisciplinary assessment completed by evaluators who are knowledgeable and experienced in assessing ASDs.

Discussion Questions

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1. Defend the following statement: The field of the professional is less important than expertise.

The best instruments are meaningless when those interpreting them do not have the training and experience to make accurate judgments. Seeking assessment from an experienced and knowledgeable professional prevents delay in accurate identification and the frustration of unanswered questions. Early encounters with professionals who provided false reassurance may sabotage their receptiveness to the input of others who recognize the symptoms of ASD exhibited by the child. Alternatively, the error of incorrectly assigning the diagnosis of an ASD carries risks. Working with professionals with expertise in ASD helps to avoid these and other pitfalls.

Citation and References

If included in presentations or publications, credit should be given to the authors of this module. Please use the citation below to reference this content.

Aspy, R., & Grossman, B. (2008). Assessment for identification: Online training module (Plano, TX: The Ziggurat Group). In Ohio Center for Autism and Low Incidence (OCALI), Autism Internet Modules, Columbus, OH: OCALI.

Assessment for Intervention References

Autism Society of America.(n.d.).Diagnosis and consultation. Retrieved July 17, 2007, from

Baranek, G. T. (1999). Autism during infancy: A retrospective video analysis of sensory-motor and social behaviors. Journal of Autism and Developmental Disorders, 29, 213-224.

Clifford, S., Young, R., & Williamson, P. (2007).Assessing the early characteristics of autistic disorder using video analysis.Journal of Autism and Developmental Disorders, 37, 301-313.

Filipek, P. A., et al. (2000). Practice parameter: Screening and diagnosis of autism: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55, 468-479.

Individuals with Disabilities Education Improvement Act (IDEA) of 2004, PL 108-446, 20 USC 1400 et seq.

Johnson, C. P., Myers, S. M., & the Council on Children with Disabilities.(2007). Identification and evaluation of children with autism spectrum disorders.Pediatrics, 120(5), 1183-1215.

Lord, C., & Spence, S. (2006). Autism spectrum disorders: Phenotype and diagnosis. In S. Moldin & J. Rubenstein (Eds.), Understanding autism: From basic neuroscience to treatment (pp. 1-23). New York: CRC Taylor and Francis.

Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2006). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders

Osterling, J., & Dawson, G. (1994). Early recognition of children with autism: A study of first birthday home videotapes. Journal of Autism and Developmental Disorders, 24, 247-257.

Osterling, J., Dawson, G., & Munson, J. (2002).Early recognition of 1-year-old infants with autism spectrum disorder versus mental retardation.Developmental Psychopathology, 14, 239-251.

Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders.Research in Developmental Disabilities, 28, 9-22.